Dani will be given a chance at a more normal life with a 5 out of 6 match adult bone marrow donor. Dr. Hayashi said the adult bone marrow was a better fit then the cord blood they were looking at. So the agenda is going to go something like this. They will make a final decison (between 2 different 5 out of 6 donors) next Thursday. Then once the decision is made the transplant will occur 4 to 6 weeks later.
Just to get everyone ready, the way they count down the days is any day before the transplant is a negative and any day after transplant is a positive. So the day she gets her transplant will be day 0.
Dani will need quite a few test in the next month or so. The will want to get a base line on all of her vitals. So I know currently she will be getting an MRI, X-Rays of all her bones, Hearing, Developmental, Echo, EKG, Bone Marrow, and blood test.
Day -22 Dani will go into the hospital for 4 days of chemo. She will come out for a couple weeks and then go in at -6 days and stay until after the trasplant. She will have 4 more days of chemo and then 2 days rest and then the transplant. If all goes well she will be in the hospital for 4 weeks after that.
Jason and I are trying to figure out the best course of action on us working and taking care of the family. We have some hard decisions ahead of us.
Also we will be having a Bone Marrow Drive on September 23rd at the James Eagen Center in Florissant on Dani's behalf. Currently it will cost $25 dollars for the first 100 and $55 dollar after that but we are trying to get some corporate sponsors to help with those cost. When I get more information and a flyer I will let everyone know. We were so hoping to get a 6 out of 6 match for Dani and we need to do everything we can to get more choices in the registry. I plan on this being an annual event.
Saturday, August 19, 2006
Dani did really well during her Enzyme Replacement Therapy. She does not sleep like she use to but she was in a very good mood. Jason and I are going to meet with the doctors and nurses next Friday to make a decision on which donor to use. I will let you know more after that meeting.
I had a call from the city of Florissant this week and they are going to provide a facility to have a Bone Marrow Drive. They are going to call back with what dates they have available in September and I will let you all know when that is going to be. We will create a flyer and I hope you all will send it to everyone you know. We need to get more donors into the registry. We were hoping that there would be a 6 out of 6 match for Dani and that does not seem to be the case. So our goal is to make sure that the next child has more options and a better chance to find the perfect match.
Friday, August 18, 2006
Monday, August 14, 2006
I was hoping to have a picture from the fundraiser before posting but I have not received any yet. We had a wonderful time Friday night. The boys had a blast singing Karoke. Miss Dani and I danced and she loved it. We had awesome food and really cool baskets to raffle. Heather and Diane did an awesome job putting everything together. Erin, Chris, and Melissa slaved over the stove to get the food prepared. They do not want to see another noodle ever. I hope everyone enjoyed themselves.
Jason was told on Friday that Dani should be getting her transplant Mid Oct to Early November. We are definitely ready to get the process rolling to get her better but we are also very scared about the entire situation. Everyone has been wonderful with their support and prayers.
Gabe and Ethan started school yesterday and loved it. We will hope it stays that way. Gabe is in 4th and Ethan in 2nd. Gabe is upstairs and now changes classes for different subjects. He is growing up so fast. Ethan has the same teacher Gabe had and that will hopefully be a bonus. I will post first day pictures when I get them downloaded.
Wednesday, August 09, 2006
If you are up and interested I will be on WIL 92.3 Cornbread in the Morning tomorrow morning anywhere from 5AM to 10AM. We did the interview today and again let me state that I am not the best at public speaking. hehehe. The fundraiser is sounding like its going to be a great time!!!
Also Dani's cardiologist appointment yesterday went really well. Her shortening fraction (shortening fraction measures and ratios the change in the diameter of the left ventricle between the contracted and relaxed state) when she was born was at 18 (they were talking about a heart transplant at that time) and has stay between there and 22. Yesterday it was at 25.4 (YEAH!!!) the low end of normal is 26!!! Her ejection fraction (a useful measure of left ventricular performance) at her lowest was 38%. Yesterday it was 60% and the normal range for a female is 55-75%. Great news all around.
So she is doing really well with the enzyme treatments. Dr. Goel did not increase her medication at this time because he wants to see if her heart improves more with just the treatments so we go back in 2 months to check it out.
Talk to you all soon
Sunday, August 06, 2006
Well let us start off by saying we were not too happy with the hospital Friday. Someone dropped the ball and did not order her enzymes this week. So she is missing a week of treatment. They said they would order an extra dose this time around so it should not happen again. Very disappointing to know that you are having to rely on professional to make sure your daughter is taken care of and it doesn't happen.
Dani has a cardiologist appointment on Tuesday. I have high hopes that her heart is rebounding well with the enzyme treatments. We will definitely post and let you all know.
I forgot to mention about finding a match. The hospital has results from one cord blood match and are waiting on another. They also have one adult marrow match and are waiting on another. The cord blood are both 4 out of 6 matches and the adult marrow are 5 out of 6. They will put all the results together and pick the best for Dani.
Heather called and said we have quite a few tickets available still for Friday's fundraiser. Gather your friends and come out for a fun time. We have awesome raffle prizes and the lodge itself is beautiful. The foods is going to be wonderful also. Hope to see you there!!! The details are posted on her website (Link to the right).
Two articles to mention.
New Town mentioned the benefit in July, in their August newsletter.
And Sydney, a little girl with Hurler's, who is home in Illinois after a BMT has an article out about her that is very interesting.